Symptoms

Is This A Scary New MS Symptom?

Is this a scary new MS symptom, or what?

Assuming you’ve already been diagnosed, there are days when you may find your body doing something bodies aren’t supposed to do, and you know that you’re likely experiencing a new MS symptom. Wonky vision, weak knees, and sketchy bladders, are all classic MS symptoms. But MS is a complicated mother fucker and sometimes it’s not so cut and dried. More than once, I’ve had to remind myself that not everything is MS. It’s just that 9 times out of 10, it is MS. When you have a disease that affects the central nervous system, just about anything can go haywire. 

Even worse than wondering if a new health issue is an MS symptom, is when on some level, you know it’s MS, but your doctor doesn’t necessarily agree. When I showed up in Emerg with my very first MS attack, I was told I had optic neuritis. My sudden hearing loss was dismissed. Because “hearing loss isn’t a symptom of MS”. 

I’m sorry, what? I couldn’t hear you because I’m deaf in one ear. 

Like white peacocks, or Starbucks getting my name right; just because something is rare, doesn’t mean it isn’t real. My head explodes just remembering my first taste of the medical gaslighting that sometimes comes with chronic illness. Sadly, certain experts would rather tell you nothing’s happening than admit they don’t know what to do about it. 

Which brings me to my most recent, new, and confusing (possible) MS symptom: I’ve been losing my voice. It’s sometimes difficult to talk, it’s hard to cough, and my speech gets fatigued the same way my legs do. It’s not a sexy ScarJo rasp. No. That’s not how MS plays. I sound more like Marge’s mom on The Simpsons. Though not unheard of, vocal issues aren’t a tell-tale MS symptom, so it begs the question of whether or not my hoarseness is caused by MS, or what. In my mind, of course it’s an MS symptom, because wtf else could it be?

“At the risk of losing my voice, let me say one more thing, I’m sorry I came.” –Jacqueline Bouvier

Okay, it could be other things, and I’m grateful to have a doctor (now) who takes me seriously, and will get to the bottom of this. In the meantime, I’ll try not to obsess over what a future without talking looks like. I mean, The Banker and I have a strong marital ESP game, but it’s limited to looks that mean “Save me, I don’t know this dude’s name”, “We hate her, right?”, and “Even though I asked you not to buy chips, if you eat the rest of the chips we will have a problem”.

Obviously not enough left to share.

Thanks to COVID, mask-wearing doesn’t even allow for a friendly smile or (more likely a cautionary RBF) anymore; and without words, I’m basically left with eye rolls and raised brows for casual communication, and I’ve got so much more to talk about. Like, “we hate her”, is enough said at the party, but clearly we need to dig into this more in the car-ride home.

I don’t just use my voice for gossip and complaining either. Lately I’ve been covering the French portion of my niece’s COVID-induced homeschooling, I’ve been a guest on a few podcasts, and I even used to sing until MS decided otherwise.

Me in a past-life. Every reinvention deserves a new hair-do.

There are no ‘good’ MS symptoms. They all suck, and sometimes it feels like whichever symptom is the loudest is the one I’ve decided is the worst on any given day – or any given moment. When nerve pain keeps me up at night, that’s my worst symptom. When I take something to help the pain, but it makes my legs too weak to walk the next day, my paralysis is the worst thing I’ve got going on. When I need a bathroom, and there’s none in sight, well, you get the picture.

But in the hierarchy of MS symptoms, new ones feel especially troubling–a chilling reminder that my pact with Satan must be set to expire because MS is still lurking, trying to fuck shit up. It’s hard work building the kind of mental resilience required to process and accept so many disabling symptoms. When you wake up with a new problem, wondering what fresh hell this is, you realize that with MS the work is never done. 

So, now we wait. I’m being sent for tests; and in the meantime, my Ocrevus start date gets pushed back. Again. Because it doesn’t make sense to suppress my immune system and then send me into the hospital during a pandemic for diagnostics. 

Whatever’s going on, I’ll cope with it. I always do. I think MS is at its worst when it erodes the things that are fundamental to our identities. How many times will I be forced to slap on a smile, pivot, and reinvent? 

As many times as it takes, I guess. 

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10 Things I’m Afraid Of (With MS)

Recently I ripped off the popular podcast Ten Things I’m Afraid Of by posting my own morbid list on my Insta stories, but with the added qualifier ‘with MS’. Because everyone already knows centipedes and talking on the phone are scarier than death.

Send a text like a normal person.

If you have MS, a healthy fear of prescription costs, PML, and progression are probably already on your radar. Rest assured this light-hearted list is not meant to jack up your anxiety about everything that can go wrong when you have this disease. This is about airing my own brand of neurosis that maybe some of you can relate to. If you don’t have MS, consider this tally a touch of insight into the day-to-day drama of coping with a chronic illness.

Ten Things I’m Afraid Of With MS

1. Dropping Things

I drop stuff all the effing time. Ask The Banker or the dog how many times a day I drop my cane on the hardwood (it’s 87) and they will slowly shake their heads in silent rage. Sometimes I drop something, pick it up, then drop it again. If I’m in a good mood, I assume the universe is providing me with free physio, then give myself permission to skip the gym. That’s a level one drop.

A level two drop is a bit more consequential. Like the time I dropped my cute cigar-box purse at a production of Mary Poppins spilling all my tamps and caths into the aisle. Despite my protests, the stranger-man next to me insisted on picking up my swag until he realized what he was touching. That’s fine, he should grow up.

Because the very, very worst, level 3 shit to drop is something that breaks. Especially if that something is full of liquid, like smoothie or vase-water, and I’m all alone and have to clean it up before someone eats broken glass and the floor turns blueberry. My lack of balance and shoddy hip-flexors make this a Survivor-level challenge where the only reward is that the dog’s not bleeding and I no longer have breakfast.

Oh, what treasures do you hold?

2. Rain

My fear of rain as someone with MS has everything to do with not wanting to wreck my blow-out, because blow-drying my own hair is a fucking nightmare, and it’s impossible to wrangle an umbrella and a rollator at the same time. When I posted this fear on Insta, someone was like, why don’t you just get a rain hat? I don’t know, Becky. Why don’t I just leave the house in a shower cap?

3. Jekyll and Hyde-ing

One day, about a month ago, I woke up without pain. As I found myself assessing this unfamiliar phenomenon, I also realized I’d somehow slept through the night. I felt like singing, or at the very least not scowling. And then I was like, hold up. What is this feeling and who am I?

What if I have this whole other (way better) personality without pain and insomnia? I’m a skosh afraid that having MS facilitates a bitchier, harder-to-be-around version of moi than the ray of sunshine I might have been in an alternate reality. Damn, Becky. I’m sorry for my tone earlier. Thank you for the suggestion.

Update: I just googled rain hats, and Becky can go to hell.

4. Being cold

I’m cold right now, but I’m also afraid of being cold in the future. MS means my temperature regulation is broken, but my anxiety is working just fine. I can work myself up into a state in July thinking about how much January is going to suck in this cold Canadian tundra. Recently, my order of Little Hotties got lost on Amazon and I had to go without this life-saving, foot-warming product for five excruciating days. You don’t even know. Now I feel like I have to stockpile them so that this never happens again. I’m afraid my fear of freezing will turn me into an MS Doomsday Prepper.

5. Speaking of doomsday prepping…

I have too many purses, so I try to make sure there are a few disposable caths in every bag (too much catheter talk? welcome to MS), but occasionally I fuck this up (not to mention I recently discovered that caths for real expire, which does not help my doomsday plan).

One time, after I’d left to do my Lemtrada labs and get a hair appointment, I realized I was sans Cathy when it came time to give my urine sample. This was especially troubling because I’d been saving my pee for the test, and I needed to go. No worries, I thought. I bet the lab has some. They did not. Fortunately, we were next door to a pharmacy. But when I asked, they were like “ew, no”. Okay, they didn’t say ‘ew’ but they might as well have.

That forgotten pee-mate almost caused me to pee my pants (ironic, I know), forced me to return to the lab with a urine sample, made me miss my hair appointment, and cost me an extra $14.67 in round-trip Ubers. In addition to the price of the tiny plastic tube (you don’t wanna know), this particular pee cost more money than the time I was in France and didn’t have any coins for the pay toilet AT A BAR, which meant I had to buy a drink just so I could pee, creating a vicious cycle. Bien joué, Frenchie, bien joué.

6. Getting a cold

If you need a refresher on what getting sick can do to MS, please click here. My fear of flu makes me terrified of hospitals, holiday parties, and most of all, children.

“What’s that scent you’re wearing?”

“Oh, do you like it?”

“No.”

“That’s because it’s Purell and Clorox.”

It’s not me. It’s you.

7. Seatbelt sign

There are a million things to do before a big trip, and they all come to a head at the last minute. That sigh of relief you breathe once you’re through security, checked into your flight, and ready to check out of your life is what a cocktail at the airport bar tastes like. Oh, my flight’s delayed? That’s cool. I have time for one more vodka soda (soda because it’s important to hydrate). Bonus points if you’re flying Air France where I defy anyone to not drink the wine in those adorable mini bottles.

So, it’s pretty freaking rude, airlines, to ply us like this and then tie us to our chairs and turn on the seatbelt sign. You know you’re just messing with us anyway. Like, I’m not that good at walking, but even I feel like I can handle it basically every time.

I stand with you, Gérard Depardieu.

8. Stranger danger

I don’t have any confirmed cognitive decline; the lesion load on my brain is light in comparison to that of my spinal cord, where all my damage likes to party. I will cop to having difficulty focusing on any task when there’s competing noise. If you want to talk to me and the radio’s on we’re gonna have a problem.

My real cognitive problem is that I don’t recognize faces. Like, unless we’re related, or we’ve made out (and even then), I’m not gonna recognize you. Dear everyone in my building, I may have had five separate convos with you in the elevator this month, and if I see you at Ezra’s Pound I won’t know who you are.

My ability to rock a blank stare whenever someone thinks I should know them has earned me the reputation of a witch with a b. Luckily, that’s kind of who I am anyway.

9. My world shrinking with MS

MS can take a lot. What’s more maddening to me is what’s taken that doesn’t have to be. As my mobility needs change, I fear my world getting smaller as fewer spaces are available to me. I fear being disabled by my environment as much as by my body. Ok, this one’s a true bummer. Let’s move on.

10. Fish sticks or salisbury steak?

I mostly subscribe to the philosophy that fear is a waste of my imagination; but sometimes I let my flights of fancy run the show, and that’s when I visit a future day-mare where I don’t get to make all my own choices. Seems reasonable, right? Here’s where I lose you.

The choices I’m prematurely wigging out over are food choices. Like, I did not spend the best years of my life cultivating a palate that appreciates stinky cheese and truffle salt only to spend my senior years in a care facility eating boxed potatoes and off-brand chips. I am way less worried about condescending nurses who speak to the elderly in baby-talk than I am about the possibility of being served baby-food. Did you know that most of these places don’t even have a bar???

So, what are you afraid of with MS?

Roosevelt famously blah blah’d about fear being the real enemy, and I will co-sign that fear is the worst symptom of MS. That said, I feel like Roosevelt didn’t totally fact-check his whole thesis, because needing to pee without access to a bathroom is hardly unjustified terror.

Do these fears resonate? Comment on what you’re afraid of with MS, and check out the original podcast.

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9 Things That Will Make Summer Suck Less When You Have MS

9 Things That Will Make Summer Suck Less When You Have MS
 
It’s summer and I don’t feel like writing existential essays about the plight of a tragic, but beautiful heroine making her way in the world with MS. Feeling tragic is a winter activity. It’s 16 days post-solstice and I want the lazy days I was promised–where I can eat ice cream for breakfast, wear my bathing suit instead of a bra, and stare at my freckles until I’m convinced they’re cancer. If I’m writing anything it’s a reminder to take a nap, to not go camping, to pick up more rosé and to maybe get those moles looked at–if there’s time. 
 
But unlike teachers and snowplough drivers, bloggers don’t get summers off (we’re an essential service, obvi), and neither does your disease. MS doesn’t take a vacation. Or it does, but it’s your vacation and it’s photo-bombing you in every frame. In fact, summer can be one of the worst times for someone with MS. Uthoff’s phenomenon means that many with MS experience an increase in symptoms due to an extreme form of heat sensitivity that can make it so hard to function you’re longing for back-to-school commercials before the final bell has even rung.
 
Summer can suck when you have MS, but dear god, so cawinter. So instead of a sad story about summer turning into falling and falling turning into a cold early death, I present to you a few of my top picks to help you sail through the season.
 
 
9 Things That Will Make Summer Suck Less When You Have MS
 
 
1. Safety shoes that don’t look like safety shoes.
 
I misheels so bad, but there are other options to keep you from looking like you’re auditioning for Shrek The Musical. The sandals you’ve all been asking about are by Ganter, a company obsessed with foot-health and “natural walking”. If, like me, you’re currently rocking more of a supernatural stride, Trend-Able is a great resource for what’s cool and can be worn with orthotics. Trend-Able even has shoe options for dudes.
 
You don’t have to smile when your shoe game is this good.
 
2. Clothing that’s literally cool for you bitches who hate the heat.
 
If you wanna get your vitamin D the old-fashioned way without wilting like every plant that’s ever been under my care, these cooling towels by Toronto-made (holla!) Koldtec™ will keep you cool like Drake and dry like Dry (the French rapper you’ve never heard of). Trippers get $5 off and a bonus ice-strip with code TRIPPINGONAIR5, or a bonus ice-strip and $14 off the bundle with code TRIPPINGONAIR14.
 
3. Hot packs for the rest of us.
 

While most of me knows it’s summer, my dysesthesia-impacted feet haven’t gotten the message. It’s 30 degrees and I’m on my balcony wearing a sweatshirt and down-filled booties. (Yes, I’m also wearing pants, pervs.) I’ve tried SO MANY THINGS to fix my freezing foot pain and these warmers suck the least. The robots at Amazon who package and send them out in July are like what the fuck, Canada, are you really that cold? No, it’s just me. 

Perfect for skiers and shivering consumptives.
4. Face mister.
 
When I lived in France, I saw people carrying enormous bottles of Evian-filled misters everywhere. I think the whole country needs to discover freon, but there’s no denying the French-girl cool that comes with misting mineral water onto your puffy red face with a $25 brumisateur.
 
I got this one for free for buying too much make-up. Suckers.
 
 
5. The sound of silence. 
 
There are certain sounds we only hear in summer–the saw of a lawnmower, the smack of flip-flops, my dad yelling “Close the damn door; I’m not paying to cool the whole bloody neighbourhood”. And while these noises are objectively unpleasant, none hurt my ears so bad as a tree full of clamouring birds at the crack of 5:12. Or my douchebag neighbours hosting yet another late-night laugh-riot. Either invite us, or shut the fuck up, Todd. 
 
These earplugs are powerful enough to drown out my FOMO while allowing me to get the kind of sleep someone with clinical-grade MS fatigue requires.  
 
Shouldn’t even be legal–you’re def sleeping through a fire-alarm.
6. Clean-ish hair.
 
The first symptom listed on the pamphlet you’re given with an MS diagnosis should be dirty hair. Right at the top. Between the heat, the slippery surfaces, the effort it takes to lift a blow-dryer to my head, and the four days a full shower takes off my life, most of the time, clean hair isn’t worth it. I’m currently testing the limits of how long I can neglect basic hygiene and still maintain my relationships. So far, it’s 7 days. The first 4 of which are made significantly less gross with dry shampoo; for which, I assume, the inventor received a Nobel Prize.
 
My favourite from Aveda. Smells like camouflage.
 
7. Legitimately clean hair.
 
When my 7 days are up and it’s time to re-introduce my scalp to water and soap, I’m lucky enough to live in one of a number of cities that has an Aveda Institute where I can get a beauty-school blow-out for about 15 bucks. WHAT?! Ok, so you have to sign a waiver, but even if my student stylist turns my blond to blue, or crimps where she should be curling, my hair will still look better than anything I could ever do.
8. Underwear you can get drunk and pee your pants in.
 
Technically, alcohol-induced incontinence is not what these knickers were designed for, or at least that’s not the Knix™ marketing strategy. In fact they’re marketed more as high-tech “period-underwear” that can handle a little LBL (light bladder leaks).  They may not replace your current continence care, but if you should happen to introduce two Manhattans to an over-reactive MS environment, you would be pretty protected while wearing this gitch. So I’ve heard. Bonus points for a design that’s so good, so normal-looking, you’ll never have to mention your unmentionables to anyone lucky enough to see them. 
 
I’ll have two please.
 
9. Time and energy.
 
I never travel without Optimus Prime, my cool and comfortable, convertible rollator/transport chair. I surf the walls and furniture on my own time, but when I’m traveling, I don’t wanna waste away in a hotel room, eating $18 chocolate bars, yelling at the slow wifi because I don’t have the spoons left to spend my $18 on a Campari-spritz at a tourist-trap bar the way God intended.  
Triumph Mobility is offering TOA readers a $100 discount and a free cane/bag holder on a Rollz Motion with code TRIPPINGONAIR in the US and Canada. Or click here for New Zealand, here for Australia, and here for The Netherlands. 
 
This kid knows how hot it is.
 
 
 
What are your summer health hacks?
 
Stay cool, Trippers. And happy summer! 
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How To Treat An MS Attack With Steroids And Lies

How To Treat An MS Attack With Steroids And Lies
Steroids can fix this, right?
 
The day before deciding to start a high-dose course of prednisone to treat a flu-induced pseudo-relapse of my Multiple Sclerosis (MS), I went through my usual check-list of pros and cons. I’m familiar with the intense side-effects and general suckitude of steroids at this dose; and if I’m being real, I already knew I was going to take them, but examining the decision felt like the responsible thing to do. 
 
Cons
  • insomnia 
  • water retention
  • GI upset
  • sore throat
  • temporary insanity
  • my coffee (and everything else) will taste gross
  • I’ll be out of commission for at least a week
  • FOMO – I might miss my nephew’s b’day party
  • am I finally gonna get that fucking hump?
 
Pros
  • warm feet and freestyle pees for a few days
  • maybe I can stop this slow-slide to the ground
 
The day before I pick up my script, I’m still struggling to convince myself that the decision to give steroids a shot makes more sense than to ride it out. I look for dramatic signs of worsening – the weakness and slowness that normally terrify me are now soothing me into believing I’m making the right decision by taking the poison. The magic potion of prednisone has worn off considerably since the days when it would booster-cable me back to my baseline. I’m dealing with a pseudo-relapse instead of an actual MS relapse, and my formerly malleable Relapsing Remitting MS (RRMS) has evolved into a clear case of Secondary Progressive MS (SPMS). A lot of doctors wouldn’t go near me at this stage with steroids, believing that the risks outweigh any potential benefit.
 
Which is easy for them to say, with their upright, functioning bodies and absence of need for Hail Mary interventions. 
 
But this fever-induced set-back had me and my doctor concerned enough to give it a shot. 
 
Here’s how it went down. 
 
The Day Before Treatment
 
I make a bone broth, and stock up on applesauce and ginger-ale knowing how badly steroids mess up my tummy. 
 
Get my hair washed, buy four new books, and go for brunch with The Banker so he can have a recent pleasant memory of me before steroids make me turn on him. 
 
still vain, tho
 
Day 1
 
I cover all the mirrors so I can remember my face as it was. 
 
This is my first time getting oral prednisone (as opposed to IV), so I text my blogger friend, Beth (Bethy Bright And Dark) to ask for tips, like what drinking games she suggests for swallowing 62.5 bitter pills in 15 minutes. She’s starting treatment the same day as me, and I feel like it would be fun to place bets on which one of us will cry first. 
 
Day one passes without incident, and feels similar to IV treatment. 
 
So far, so good.
 
15 minutes was not possible. It took me 59 minutes to choke these down.
 
Day 2
 
I wake up with a headache after 3 hours and 17 minutes of “sleep”, but my legs are so chill I can’t make them seize up if I try. 
 
My cheeks are pink and for once I don’t look like a corpse. 
 
I check in with Beth and learn that “Umbrella Holder” is a job you can pay someone to do when you need both hands on your rollator. I marvel at all the ways MS is creating jobs and fuelling the economy.  
 
Later, enraged about not being able to get up on a chair to reach a high shelf, I hurl an open box of chocolates into an upper kitchen cupboard. In defiance of physics most of the chocolates stay inside the box which only makes me angrier. 


Day 3
 
The sweet spot of treatment, I haven’t slept and I don’t care. 
 
My lack of spasticity is the bomb. 
 
My balance is drunker than normal and my bowels are MIA, but my feet feel gloriously fucking temperate. I decide (and say it out loud) that I would endure this treatment every couple of months just to have a day or two where my feet aren’t confusingly burning and freezing at the same time. 
 
Realizing I don’t own any red velvet pants, I go on a frenzied online shopping spree. This feels reasonable. 


Day 4 
 
My three day treatment is over. I do a timed walk that’s half a hallway less than the day before I started treatment. I feel too tired to have feelings about this. 
 
My new books are still in the bag; I’m too spacey and in pain to read or even watch TV, so I spend time staring at the wall, willing time to pass. 


Day 5
 
I wake up after 9 glorious (medically induced) hours of sleep.
 
After an actual bath I slather my legs in special-occasion Hermès body lotion, because sometimes not wanting to die can feel like a special occasion. 
 
Just as things are looking up, I watch 2 episodes of This Is Us and feel tricked into a meltdown. I cry my eyes out because Jack, and life, and the Big 3. And. I. Just. Can’t.  
 
I text Beth. It’s a draw. She’s melting down too. 


Day 6
 
My stomach feels like it’s bleeding and I question my ability to make good life decisions. I vow to God and Beth that steroids and I are never, ever, ever, ever getting back together. 
 
Decide that, for my suffering, I definitely deserve $700 Dior sneakers. 
 
Don’t actually buy the shoes. 
 
Maintain I deserve them. 


Day 7
 
I have to be somewhere at 8:00. In the morning. I knock over my bedside lamp and shatter the bulb into a literal trillion pieces just to give The Banker something extra to do at 7.15, while I lay limp and useless in bed. 
 
Finally decide to look in the mirror and fail to recognize my stretched and featureless face. 
 
Notice a new burning pain on my torso and convince myself I have shingles. (I don’t have shingles.) 
Day 8
 
I manage to leave the house despite feeling weaker and slower than I did before treatment. 
 
I eat a full meal, including leftover birthday cake from my nephew’s party (that I missed). 
 
I’m coming out of the effects of the drug, and it’s a huge relief – this was the hardest course of steroids I’ve ever done, but the treatment has failed me. 
 
 
Day 10
 
We have theatre tickets, so I pace myself all day, careful not to blow through too many steps. I take two breaks during the day to lie down for a full hour. 

Briefly wonder if it’s possible that steroids have actually made me worse, but feel too afraid to Google it.
 
The effort it takes to walk from the apartment to the street breaks me. 
 
On the way to the theatre I snap at The Banker and cry in the Uber. 


You can’t even tell how psycho I am.
 
I told myself steroids would do something. And that part wasn’t a lie. The lie was that they would do something good. Some small thing to ease the burden of MS; to give me some fraction of increased strength or endurance – even if it’s just a taste; a temporary feeling of how it used to be, or a peek at what potential remains. 
 
The lie I told myself was that it was worth it. The lie I told myself was that my disease is still modifiable. The lie I keep telling myself is that I have some control or even influence over what direction this thing takes. 
Day 12
 
I continue to find pieces of shattered lightbulb in unexpected places. 
 
I appreciate that my coffee once again tastes like delicious coffee. 
 
I acknowledge that my brain on steroids doesn’t always tell me the truth. 
 
I try, try, try to believe that just because I’m not yet as strong or as fast I was 5 or 6 weeks ago doesn’t mean I can’t still get there. 
 
I count my blessings and pack my bikini. I’m spending the next phase of my recovery on a beach with people who love me. And if I can’t walk to the bar, I’ve got Optimus Prime and The Banker to support me. 

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My Worst MS Day. Ever. So Far.

My Worst MS Day. Ever. So Far.

Last Monday was my worst MS day. Ever.

 
I haven’t had a lot of ‘disease activity’ over the last year. Don’t get me wrong, Multiple Sclerosis affects me every day; but that’s old news, the stuff I’m used to. After coping with, and recovering from, a sudden decline in my mobility last Christmas, I spent most of 2018 feeling grateful for all the steps I’m still able to take, and proud of how I’ve been able to focus on what I can do, without obsessing over scary hypotheticals. 
 
It’s possible I’ve been a little too hasty in giving myself props. After all, I’ve had Multiple Sclerosis for a thousand years already; I should know a thing or two about living with chronic illness. MS is always going to be hard, but it’s relatively easy to keep your shit together when things are stable.
 
Of course, this is MS, and stable only lasts so long.
 
And so it was that last Saturday I woke up in New York City, in town for a Very Important Bestie’s Very Important Birthday, feeling only slightly rougher than usual. I blamed my heavy vocal cords on dry airplane air, a late night, and my attempts to channel Eminem at a karaoke dive-bar the night before. I didn’t have time to give my fatigue too much thought. I was in the Big Apple at Christmas-time and festivities were afoot. 
 
As the day wore on, it became harder to ignore the congestion that was building in my chest, but ignore it I did. There was no way I was going to be sick during a weekend in one of my favourite cities, to see one of my favourite people, at one of my favourite times of year. I threw on a red lip, shoved a wad of kleenex up my sleeve, and made the sign of the cross, before heading to my VIB’s VIB dinner at a legendary New York steakhouse.
 
What’s her secret? That wristlet is full of caths and there are 18 tissues up my sleeve.
 
We arrived at the restaurant, ready for good times. There were three or four steps into the dining room, because big cities haven’t gotten the accessibility memo yet. This was annoying, but manageable. As The Banker tucked Optimus Prime, my convertible rollator into a corner, a friendly waiter helped me negotiate the stairs down to the table where our friends were waiting.
 
We had an amazing meal, my last pleasant memory of the weekend that would be cut short. By the time dinner was over, I knew with a sinking feeling that I was, for sure, coming down with something. What I didn’t know was just how badly whatever bug I was battling was about to start poking the MS that had been relatively quiet this past year, with a stick.  
 
Enter the pseudo-relapse. 


Unlike a true MS exacerbation that happens when there are new lesions on the brain or spinal cord, a pseudo-relapse can be caused by things like infections, increases in body temperature, exercise, stress, lack of sleep, a butterfly flapping its wings. A pseudo-relapse wakes up old symptoms that may have resolved, or makes existing symptoms worse. And in my particular case, on this particular week-end, much fucking worse.

 
When it came time to leave the restaurant, those same stairs I’d negotiated with a cane and the arm of an anonymous man were suddenly impossible. In the span of a few hours I’d gone from prancing around Manhattan, shopping and posing for pics, to being carried up three stairs in a wheelchair by two burly men. Okay, one was a waiter, and the other The Banker. Neither were particularly burly.  
 
Though it was cold and drizzly and the hotel was 30 minutes away, I didn’t want to take a cab because I didn’t think I could physically get out of my chair to get into a car. So we walked. I mean, The Banker walked. And pushed. I sat, wrapped in the blanket I’d taken from the hotel, feeling defeated and small after the whole restaurant hoist, ready to sleep it off and start fresh the next day. 

But there was nothing fresh about the next day. 


As I lay in bed, flat on my back, my anxiety turned to dread when I realized I couldn’t sit up, turn over, or bend my legs. At all. I woke The Banker who pulled me into a seated position. As soon as he let go, I went crashing back down; both of us shocked to learn I couldn’t hold myself up. 

 
I knew I was running a fever, and figured I was getting the flu. I know what that can do to MS. But just because the pseudo-relapse isn’t a real relapse, doesn’t mean it can’t do real damage. Here’s something I just happened to have read on Bart’s MS a few days before my deep dive into a new level of disability.
 
“Every time you get an infection it causes your immune system to produce cytokines, or inflammatory messengers, that travel to the brain and boost(s) the activity of the microglia. The hot microglia then exacerbate the damage that MS is doing to your brain and spinal cord. This is why many of you tolerate infections so poorly and often don’t recover back to baseline after a severe infection.”
 
I’m not exactly a science girl, but it sounds to me like cytokines are Satan’s envoy, sent to provoke the hot microglia into a bar-fight in my brain. None of this is good. The possibility of not recovering back to baseline is what makes colds and flus such a freaking nightmare for people with MS. Like a real life visit from a very dark Dickensian ghost, for a few days this Christmas, I had a glimpse into a possible future where I am less independent (the gentlest way to put it). This past week-end, I got to try on what it feels like to have to ask for help. 

For Every. Single. Thing. 


My pseudo-relapse lead me to experience the uncomfortable dynamic of being dependent on my partner, of apologizing for things that are beyond my control, but I nonetheless feel responsible for. I felt the demoralization that comes with the constant please and thank you’s for things I never wanted to need.  


And I hated it.
 
Until this past week-end, I’d spent the past year feeling pretty kick-ass and mentally strong. I haven’t been wigging out over future disability day-mares. And now I suddenly find myself jolted back into consideration of a future that once again doesn’t feel so improbable. It’s a future that feels like it’s one step away instead of ten. And it’s just too hard to imagine. 
 
So I won’t imagine it. Or I’ll stop imagining it. Now that I’ve given voice to my fears, I must put them back in a box and light them on fire. As my flu symptoms began to resolve, my strength and independence blessedly began to return. I’m still recovering, and fingers crossed, I will get back to baseline. 
 
Today at least, I am okay. And that has to be enough. 

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Winter Can Hurt When You Have MS: 8 Things To Do

Winter Can Hurt When You Have MS: 8 Things To Do
 
A lot has been written about heat intolerance and Multiple Sclerosis; and yeah, put me in a hot bath and I’m al dente in 6 minutes or less. But somehow, even in that bath, my feet manage to maintain a corpse-like grey and still feel cold. If you have MS, the heat might mess you up, but feeling cold can be it’s own kind of torture.
 
It’s called Dysesthesia. Dys – meaning wrong and aesthesia meaning sensation. Like a twisted game of Telephone, it happens when damaged nerves send inappropriate messages to the brain. It can feel like pins and needles, an electric shock, cold, or burning pain. 
 
Just like everyone’s MS is different, so is everyone’s MS-related Dysesthesia. For me, it means that regardless of room temperature or time of year, whenever my nerves decide to drunk-dial my brain to talk about their feelings, my brain (who doesn’t speak Vodka), decides I’m cold. And not a cute, ooh, I’m a little chilly, let’s get cozy kind of cold. Screw you. It’s a bone-deep, painful, unholy Arctic chill, that ironically feels more like being on fire than anything a sweater could solve. 

There’s nothing cute about this look.
Or this one.
My attempts to cope with this constant confusion include fully-clothed visits to the sauna, regularly blow-drying my body, and buying coffee just to hold the cup. I use the car seat warmer in the summer, wear down-filled, outdoor camping booties in the house, and my most recent Make-A-Wish is to have all the hardwood ripped out and replaced with heated floors, because my feet, by far, bear the worst of it. My toes look so disturbingly undead that whenever I get a pedicure, the aesthetician tries to scrub off the remnants of what she assumes must have been blue polish. 

Someone at the MAC counter asked if my nose is red because I drink. Rude. My mom knit me this itchy AF beak blanket because my nose is THAT cold.
All of these strategies are bullshit, of course. I’m still Jack Nicholson at the end of The Shining cold. While there are medications that can help treat these sensory mind-fucks, I haven’t found any that work for me. But talk to your doctor, because everyone’s MS is different, and as every fangirl knows, winter is coming.
 
Don’t let anything come between you and your garbage fire.
The good news is, while it might feel like my flesh is dying, there’s no actual tissue damage occurring. The bad news is, this kind of pain is hard to understand and can make you feel like your own brain is trying to gaslight you. Don’t expect much validation from medical professionals either. Doctors know you have bigger things to worry about, like being able to walk, and see – I once had a neurologist tell me that eventually menopause would take care of this symptom – he thought he was hilarious, and sure, he did look like a muppet; but sometimes it’s the sensory that can have the biggest impact on day to day quality of life.  
 
Dysesthesia is no joke, Dr. F.
 
I was born in Montreal and live in Toronto. That’s Canada, bitches. The capital of winter. But just because winter is in my DNA doesn’t mean I have to love it. I don’t. I hate winter. Hate is a strong word, and Jack Frost can go to hell (but like, save me a seat, cause it’s warm there). It’s not just the cold. Negotiating a rollator on unploughed sidewalks sucks. Bladder urgency is not conducive to 30 layers of clothing. Chapped lips, insufficient sunlight, salt stains, and static cling all leave me asking myself Why the fuck do I live here?

diversity, healthcare, opportunity, freedom, food culture, regular culture, brunch culture, friends and family, maple syrup, tolerance, Tim Hortons…

Oh right.  #sorry
 
I can’t love winter, but I can try to hate it less. In my next life I’m coming back as the surface of the sun, or Fat Elvis, but until then, I want to learn how to embrace the season without freezing my actual tongue to a pole. I’m trying to adjust my attitude by focusing on appreciating the positive things you can only really do in winter. With that in mind,


8 Ways To Make Winter Suck Less:

Winter Food
Strawberry shortcake and sangria are over; let it go. And while no reasonable person looks forward to brussels sprouts, beets, cabbage, or any of the gross things that grow in tundra, it doesn’t mean you can’t eat your way through winter. Comfort food is the solution, and if you can get someone else to make it, even better. I’m talking shortbread cookies, beef stew, mashed potatoes, mac and cheese, grilled cheese, cheese fondue, basically anything with melted cheese. 
 
Drink Through It
Two words: Seasonal Lattes. Call me basic, but there’s something seriously soothing about a candy-cane cup of caffeinated warm milk. And only in winter can liquid chocolate be considered a legitimate breakfast food. Adding Irish cream, Kahlua, or Peppermint Schnapps to your afternoon coffee seems like substance abuse in the summer, but when it’s dark out at 4:30? Fair game. 
 
Let Yourself Go
Don’t even worry about what all this extra eating and drinking is doing to you. Nobody can tell what’s going on under that snow-suit, and did I mention it’s dark? Now’s the time to embrace winter weight, stop shaving your legs, or giving a fuck; that’s spring’s problem. You don’t have to wear pants with a waistband anymore. If you do have to leave the house, wrap yourself in a blanket scarf, and suddenly you don’t look derelict, you look European. See you in April, bra.
 
Make Like The Danes #hyggelife
Despite living in a damp, sunless country, the Danes have been shoving their happiness down our throats since happiness lists were invented. From the land of Lego, stylish mobility aids, and dogs that look like tiny horses, comes Hygge; the hug you can give yourself. If you don’t know about this culture of candles and coziness, I don’t even know who you’re following on Insta; but if you’re like me and you love a trend, a quick fix, and the North-American commercialization of a pure, simple tradition, Hygge is for you! 
 
Denmark: We’re better than you.
Make Your Friends Come To You
The best thing about condo life is never having to shovel snow or take out the garbage. The second best thing is having neighbours that become good friends. My building buddies and I can come and go between our apartments in our pyjamas. It’s like living in a dorm but without the academic consequences of weeknight wine-drinking, and nobody has a Che Guevera poster on the wall. Between board game night, movie night, and Ubereats, I literally never have to go outside. (Wait, don’t you have a dog? Yeah, that’s The Banker’s problem.)
 
But Actually, Exercise
Before cabin fever turns you into a murderous recluse, realize that exercise is not only essential for your physical health, it can also have a powerful effect on mood. If you’re one of those people who actually enjoys cold exercise winter sports, congratulations, you’re better than me. For everyone else, figure out a way to move. The MS Gym has free online tutorials with workouts every MS’er can do at home at every level of mobility.
 
Check Yourself 
Seasonal affective disorder (SAD) is a real thing that can exacerbate depression, making winter particularly difficult, and those of us with multiple sclerosis are at a higher risk. Meditation, those fancy light lamps, cognitive-behavioural therapy, and certain medications can help. If you’re more than a whiny, winter-hater like me, and feel legit depressed, don’t suffer; talk to your doctor. 
 
Not All Squash Is Gross
If you’re still reading this terrible advice, I feel compelled to provide you with a recipe that’s a little more in-line with a healthy MS lifestyle than the suggestion you stay in bed with an electric blanket, a bag of Miss Vickie’s chips, and all 7 seasons of Gilmore Girls. Seriously. Don’t stop your Wahls, your OMS, your Swank, or whatever MS wellness plan you’re following just because some rando on the internet tries to rationalize day-drinking your way through winter. 
 
This butternut squash and Italian sausage soup is gluten-free, and dairy-free. And not on purpose either! Take out the sausage and voilà, it’s vegan!

It doesn’t taste as good as summer feels, but it’s pretty darn close.
 
 
Roast a butternut squash.
 
In a soup pot, sauté some Italian sausage out of its casing, then add onions, carrots, celery, garlic, whatevs. Maybe a smidge of apple cider vinegar if you feel like deglazing, but does anyone actually do that?
 
Add roasted squash, a handful of fresh sage, several cups of stock, and a glug of maple syrup (obvi the real stuff, I hate winter, I don’t hate Canada). Bring to a boil, then simmer until you feel like it. 
 
Purée. 
 
It’s 102 days until spring. Stay warm, Trippers.

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Feeling MS’y: Trapped In A Bad Multiple Sclerosis Day

 
Get me the hell out of here.
 
I feel MS’y; which is to say, I feel lousy, useless, beat. Like I’ve been mother-fucking voodooed. Of course, I have multiple sclerosis and it affects many parts of my life every damn day; but, that doesn’t mean I feel MS’y every day. Feeling MS’y is when you just can’t. It’s the worst of the worst of what fatigue can do to you, and it just shuts you down. Feeling MS’y is what stops you in your already slow, drunk-walking tracks.

I knew this was gonna be a rough day when I woke up at 4:13 am to pee. Not because I don’t always wake up at 4:13 to pee (and at 1:35 for that matter). No. I knew it was gonna be a rough day when, even after lying down for 5 straight hours, I twisted out of bed at 4:13 to find my legs weak, stiff, and straight-up refusing to point in the same direction at the same time. 

I sighed knowing this was bad news; 4:13 is normally when my stems are their strongest; chilled out from doing nothing all night, with enough pre-bedtime Baclofen still in my system to keep them from seizing up. 
 
Seizing legs is 8:00 am’s problem. 
 
At 4:13 I can usually make it to the bathroom sans Blanche (my classy new walking stick). But not last night. 
 
I lurched my way to the ensuite, like the graceful goddess I am, and realized it wasn’t just my legs that were uncooperative. My whole body was feeling the kind of tired, that is way beyond tired. I was suffering full on MS fatigue. That underwhelming bullshit word that is all we have to sum up what it feels like to have been visited by a pack of Dementors. Surely the Germans must have a better term than “fatigue” for this soul-sucking vibe; but since I’m too wiped to even google what that word might be, I’ll just stick to what I’ve been using for years, and that is to simply say 
 
I feel MS’y. 
 
Now I’m trying to go about my day, fighting with myself back and forth about the decision to go or not to go to my 2:30 massage appointment. On the one hand, I only need to rally for a few steps to and from the car. Then again, there’s the physical energy it will take to haul myself onto that skinny massage table, or the emotional energy it will take to have the therapist haul my weak heavy legs up for me. And let’s not forget the effort it takes to get undressed and dressed again, and all of this suddenly feels impossible. Sounds pathetic, I know, but putting on pants has become a once-a-day on a good day deal. 
 
The struggle is real. 
 
Figuring out how best to look after myself when it affects others is always overwhelming, and I can’t even hear myself think right now because I’m breathing through my right ear, which is another thing that creeps up when I’m exhausted, and please tell me someone else with MS experiences this annoying af phenomenon, because my docs just shrug their shoulders like I’m making it up. Obviously if they don’t understand it, it must not be real.
 
So it’s an MS’y day. Which means listen to my body, but not my emotions. 

My body says stop, but my emotions say freak the fuck out, you’re never getting better. 
 
My body says clear your sched, but my emotions say you’re gonna let everyone down and if you cancel your massage they’re for sure gonna kick you out of the clinic.
 
My body says have a nap, but my emotions say have a cocktail, it’ll take the edge off, it’s summer, and you deserve it. 

My body says good point, but who’s gonna make that cocktail? The Banker’s not home for another three hours and you’re too messed-up to walk to the kitchen. 
 
You’ve won this round, Body.
 
This is Day 3 of this most recent MS slump, caused by who knows what. Did I over do it on the weekend? Yes. But only by old lady standards. Like, I went to the Farmer’s Market on Saturday. It’s not like I picked my own fruit, nor is Farmer’s Market a code name for a rave. On Sunday, I sat on my bum at a stadium for four hours while the Yankees kicked the home team’s ass. And I only drank water. 
 
Even if these tiny attempts to live like a normal have a price to pay, it seems excessive that I should still be footing that bill three days later. And despite all this hard living and partying, I’ve been going to bed early, saying my prayers, and eating clean. It’s just that sometimes, MS doesn’t give a fuck. Or, I dunno, maybe Jesus doesn’t like how much I say the F-word. 
 
So I give in, lay down, and ride it out. I’ve been here before. In the end, I bailed on my basically free massage and laid down quietly in my room for two hours while someone else cleaned my apartment. 
 
 
I still haven’t learned to meditate, but I have learned a thing or two about tempering my hysteria when things feel dire. Just because I felt like this today, and yesterday, and the day before yesterday, doesn’t mean I will feel like this tomorrow. This is MS.
 
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Why Is MS Fatigue So Hard To Believe?

Fatigue might not be the first F-word that comes to mind when you think about multiple sclerosis (hint: rhymes with suck), but it’s probably the second, and it’s definitely in the top 5 (falling, faking, fear, forgetting; take your pick). MS fatigue is a powerfully debilitating symptom that not only destroys your energy, but has the added magic of making your existing symptoms worse. 
 
Why Is MS Fatigue So Hard To Believe?
Fuck MS
I’ve barely written about MS fatigue, because frankly, it’s difficult to articulate and if you’ve never experienced it, near impossible to understand. Chronic illness or otherwise, everyone feels tired every damn day, and everyone feels frustrated and invalidated in the un-winnable game of Who Is The Most Tired.  
 
But why do I need to prove to you that my tired is the literal worst anyway? That MS fatigue isn’t just tired, it’s crushing, soul-sucking exhaustion that feels like failure at life. 
 
Well, for one thing, I’m bailing on our plans at the last possible minute. 

Again. 


And I don’t want you to be pissed at me, or worse, stop making plans with me in the first place. MS fatigue is wrecking my week, maybe even my fortnight. And perhaps more than your forgiveness, I need my own. We live in a world where we’re constantly expected to show up no matter what ails us; where most people wear the “I’m so busy” badge like a complaint and a brag all at the same time. Fatigue is the invisible symptom that makes those of us that have it doubt ourselves the most.   

 
But I can’t prove it, can I? There’s no standard test for MS fatigue, and there’s no objective way to measure it, so when I say I’m bagged (cause, really, except for the French, who ever says I’m fatigued?), it’s my word against your idea that maybe I’m just not trying hard enough.
 
This next-level tired that’s been plaguing me lately, came to a head yesterday. Convinced I’d feel better after working out the muscle tension I’d made worse when my legs had violently spasmed that morning, and happy to have an hour to just lie down, I rallied to get myself to my massage appointment at the clinic that happens to be around the corner from my apartment. Normally I’d walk, but this week I’ve been more effed than usual, so I Uber’d. I specifically Uber’d, because I knew from experience that a traditional cab driver, who doesn’t live or die by passenger ratings, would have been pissed to basically take me across the street, and I was way too emotional to deal with any surly, ableist bullshit. 
 
I asked my student therapist for a modified treatment knowing I wouldn’t have the energy to flip myself over on the narrow table at the half-way point. In fact, I had trouble just getting on that table, and had somehow arranged myself on my back so that my right foot was tucked up under my left knee. When I realized I needed help undoing this contortion, I felt so tragic and pathetic, that I almost cried. Fortunately, I was able to pull myself together, knowing that even a discount student-massage is neither the time nor the place for a proper meltdown. 

A scant hour later, as my treatment was ending, I was glad I’d left the house and made what felt like an enormous effort toward self-care. The knots had been worked out, and I was ready to drink my lemon water. Namaste. But when I went to sit up, I couldn’t. Flat on my back and mostly naked, I realized I couldn’t move either of my legs. As I was slammed back to the reality of the moment, I almost cried again. Almost.
 
I called the therapist back and asked him to bend my knees for me, thinking that would give me enough traction to push myself up. It wasn’t. With much difficulty, my inexperienced practitioner found himself having to lift my upper body to get me into a sitting position. He seemed at least as uncomfortable as I felt, and barely survived under my dead weight.  
 
If you’re thinking this is the part of the story where I actually cried, you would be wrong. 


I pointed out his scrawny arms and told him he needed to hit the weight room. I for real said this, and feel kind of shitty about it now. Kind of. In my defence, he huffed and puffed like he was lifting a bloated walrus instead of a delicate fucking goddess; and let’s face it, MS fatigue makes me fangry (like hangry but impervious to snacks), and I cannot be held responsible for my emotions while in this state.  

I feel an attitude approaching.
Rapidly accelerating MS fatigue is my number one cause of mood swings. Fanger, is the emotional impact that strikes when the smallest task feels monumental. It’s the frustration and rage at my own failing body, that gets unfairly re-directed at whomever and whatever happens to be in my way, or in the room. Ask The Banker, and he will discreetly blink twice to confirm this. Go home, PMS, you’re not needed here.  
After my massage, I Uber’ed home and somehow managed to take the dog out before falling asleep sitting up, and then waking, only to cancel plans with my new friend Andrea. I rescheduled our theatre tickets for two nights later, because I’ll definitely be feeling better by then, right?

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Ask Me Anything: What You Need To Know About Peeing Your Pants.

Recently, I asked fellow Trippers to send me the deep, dark questions about multiple sclerosis that need answering, and you guys didn’t hold back. I got so many great questions that I decided to split them into a few posts. As always, talk to your doctor. This isn’t professional advice. This is more like a psychic hotline that somehow knows the letters M and S mean something to you, and then predicts you will fall down the stairs. Spooky, right? But not medical advice!
 
Your first questions were about one of the more distressing symptoms of MS, which also happens to be among the most common: the messed up bladder. From retention to incontinence, if you have MS, chances are your bladder is trying to ruin your life. If you’re among the fortunate few whose bladder isn’t a controlling jerk, well, start doing your kegels just in case. 
 
Nobody wants to talk about bladder issues, but I am here for you. As someone who has peed her pants in so many inappropriate places, I’m taking one for the team, and spilling my secrets on how I’ve dealt with it. 

Where were you when I needed you?
Cheryl B asks:
 
Are there any medications that are successful with treating bladder issues (I wake up every two hours during night/bedtime to go to the bathroom). My neurologist only recommends self-catheterization and I do not want to do that.
 
Anonymous cuts right to the chase: 
 
Diapers or catheter? My MS incontinence is pretty much the least sexy thing I can think of, so I don’t really want to talk to my husband about it. 
 
Answer:
 
Ladies, I hear you. Double-voiding and limiting caffeine might work for some is a bullshit solution. I wish it were as simple as a pill; I know that catheterization sounds extreme, and just typing the word diaper hurts my horcrux, the idea is so appalling to me. Then again, so is publicly losing my shit. The point is, this thing is complicated. 
 
I have no experience with diapers, except I’m pretty sure I was a baby once. As an adult who likes to wear skinny jeans, and (no judgement), isn’t into kink (ok, some judgement); I’m not a fan. I realize I have to get over myself, because I don’t wanna contribute to stigma around the tools we must learn to love in order to blah, blah our best MS lives. So, let’s agree that diapers are helpful for some, and fucking call them something less…diapery. Like sparkle pants or les couches fantastiques.

Because even merde sounds better in French.
 
If you’re a regular reader, you’ll know that the clear winner for me is self-catheterization, which sounds terrifying, but is really just a fancy way of saying ‘tapping the keg’, which is just a trashy way of saying the “gold standard for medical bladder emptying” which is wikipedia’s way of giving me first prize for peeing. Medically.  
 
Okay, maybe medical bladder emptying still sounds terrifying; or at the very least, confusing, but as a long-time practitioner, I can tell you it has liberated me (like for realz, not in the Zamboni way, if you’ve been around long enough to remember those dashed dreams). You can read my love letter to Cathy here.
 
Catheterization is not without its cons. I need regular antibiotics to ward off UTI’s and supplies can be hella expensive. Plus, I obsess over antibiotics messing with my gut biome, but that’s a topic for another day. Self-cathing isn’t for everyone, but not because it hurts (it doesn’t), or because of stigma (fuck that).
 
But wait! There’s more.
 
Before committing to sparkle pants or making friends with Cathy, most people with MS will try one or more of a number of medications whose goal it is to keep your pee inside you. Again, everyone is different but these drugs were not helpful for me. Preventing urgency made my retention worse, and caused side effects like dry mouth and constipation. If you think dry mouth doesn’t sound so bad, it’s because you’re not open-mouth kissing me, and if you think constipation is NBD, I’m so happy for you; you probably don’t have MS.
 
Another option for wrangling your bitchy bladder is botox, which I have not experimented with, but have heard good things about. This is probably the most aggressive way to go. If you’re gonna get botox, you have to have first failed on the meds, and be willing to use a catheter full-time, because once you botox you can no longer freestyle at all.
 
The good news is, you have options, so explore them. Many, like me, have been able to get this under control. Don’t suffer. For gods sakes don’t stop drinking.
 
Okay, but what about bringing sexy back?
 
Anonymous, like a lot of us, wants to keep things sexy in a decidedly unsexy sitch. And here’s where the emotional cost of MS comes into play. I get it. Feeling diminished by this disease is balls. I don’t even like getting dressed with The Banker in the room because I don’t want him to see me wrangle my twisted, dead-weight legs into my lululemons, as I fail to keep from sliding off the bed and have to use a 17-step procedure to pull myself up again. No. I need to trick him into thinking I’m a graceful ballerina while I tell myself he hasn’t noticed my Frankensteinian gait because I’m wearing a push-up bra.  
 
MS might be fucking up my body, but I still need to feel, and be seen as, capable, strong, independent, and yeah, sexy. Hopefully Mr. Anonymous will support whichever way you decide to manage this, because trust me, it is manageable. And nothing is sexier than having your shit together. So to speak. 
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It’s The Worst Symptom of MS. Do You Have It?


Two weeks ago, I had a really good day. Not just a good day, a good MS Day. This was kind of a big deal, because for the last couple of years, almost all the fluctuations of my multiple sclerosis have been towards a worsening of symptoms; the pendulum almost never swings toward improvement anymore. I struggle to feel grateful for stability at the best of times, and for slower progression the rest of the time. 

But then, two weeks ago, in the gym with my awesome physiotherapist, Megan, we were both pretty surprised at how my hip flexors were performing. My balance seemed better than normal too. I’d been intending to budget my energy in anticipation of a busier than average day ahead, but suddenly felt strong enough to party like it was nine months ago, so I powered through a full workout instead.


That evening, The Banker and I went to Toronto’s massive Christmas Market in the historic distillery district. It’s a popular place, with crowds and cobblestones to negotiate, but I was bent on sipping cider and seeing the 50 ft. tree. I wanted to wander through the light tunnel and see for myself what kind of people actually traipse around gnawing on massive turkey legs (spoiler: tacky ones). We took Optimus Prime, my badass convertible rollator/transport chair, because my plan was to walk as long as possible, knowing eventually I’d need a push.

And then I didn’t.

With one little break to sit and look at the enormous tree, I spent the rest of the evening on my feet. And I was stunned and happy and hopeful about how much stamina I’d had. Was my ketogenic diet finally kicking in? Was my increased strength because I’d recently given up sugar and dairy? Has the biotin I’ve been shelling out for over the last year finally paid off?

I’m not one to find something where there’s nothing. At the end of the day, I’m a realist. But any little improvement when you’re doing everything you can just to slow down decline can feel like a massive win. And, I felt like it deserved to be acknowledged.

So I said it out loud. 

Which was obviously a mistake. 

Two days later, I tried to ignore the weird feeling I woke up with on my head. Like I was wearing a hat. And then, the burning nerve pain that usually hangs out in my feet, started showing up in patches on my legs, and my hip, even though I’d stopped eating gluten a full 6 weeks ago. In my experience, new patches of nerve pain are often the first sign that the beast is waking up. Still, I didn’t freak out.

Two days after that, it was time to check in with my physiotherapist, and do a timed, 2-minute walk test; a standard, if surprisingly unsophisticated, measure of worsening disease in the MS world. I gripped my walking sticks, and tried to go as fast as possible without actually falling. I was in a race against my own decline, and I was desperate to get even one step farther than I had during the last test. But nobody watching me lumber along would have ever guessed I was in any kind of hurry, let alone what felt to me like running for my life. 

When Megan’s phone finally beeped to indicate my two minutes were up, I was nowhere near my goal. In fact, I’d lost about 20% of the ground I’d been able to cover since we’d last tested a few months ago. My heart sank with that familiar feeling. Progression. 

Then, 3 days ago, I met a friend for lunch. The Banker dropped me off, and knowing I only had to travel from the car to the table and back, I opted to bring my cane rather than my rollator. I knew it would only be a handful of steps, and sometimes the rollator can feel like such a pain in the ass. My friend and I had a lovely, productive lunch. Afterwards, I almost made it safely to the car. In fact, I was so close to the car that as I went down, I really hoped it would be what would break my fall. Alas, it was the sidewalk that caught me. And my face. 


Oh, hey, it’s cool. I’m just gonna hang out on the ground for a bit.

Since then I’ve been replaying the walking test and the stupid fall, over and over again in my head. What happened to my good day? Why are my hip flexors still kicking ass while my right foot has just decided to stop trying? 

Is this because I forgot what beer is made of, and had half a bottle of Stella last week?

Last night I was more preoccupied than usual, thinking about this failing body, trying to be grateful for what it can still do. As I was rubbing my feet in my nightly attempt to get them to feel something other than constant burning, The Banker, seeing that I was in distress, asked me, “What’s your worst symptom right now?”.

I didn’t even have to think about it. “Fear”, I said. It’s always fear. 







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